I was officially diagnosed with Parkinson’s disease (PD) at age 62, although I've had tremors (along with what I now recognize were other, less obvious PD symptoms) for many years prior. I was told by numerous physicians not to be concerned regarding the tremors; essential tremors are not uncommon, so I pretty much ignored the red flags.

In early 2020 I found that I was having an extremely difficult time initiating a step when walking, so I decided to check with my PCP. In February 2020, while doing my physical exam, a small town, country doctor noticed the twitching in my fingers. The tremors combined with my start hesitation resulted in a recommendation that I see a neurologist. The rest, as they say, is history.

After receiving my diagnosis, I did extensive research on the Internet and found the Parkinson's Foundation website to be outstanding. Their online information library was extremely helpful in learning more about PD, and I have assembled quite a collection of wonderful info about PD thanks to their resources.

We had a very nice little cabin in rural, northern New Mexico, but the medical care was lacking in the area for someone with PD. When I retired, we moved to the Albuquerque metro area. I miss the beauty, solitude and seclusion of the Sangre de Cristo mountains, but I found a movement disorders specialist in Albuquerque and she has been absolutely awesome.

I am basically learning how to overcome the challenges of being a person with Parkinson’s disease by having access to opportunities that were not readily available prior to relocating. I actually feel blessed, and I refuse to be defined by Parkinson’s. My life, even with the daily rigors of dealing with a progressive disease, has been very rewarding!

I am reminded of a quote which, for a person with PD, I believe are words to live by:
"We cannot change the cards we are dealt, just how we play the hand."

The Parkinson’s Foundation is here to help. Explore Parkinson’s disease resources in our PD Library. 

I have always believed the old adage that if you feel something is off or wrong, then it probably is. Life began to change when I could no longer teach my fitness classes without extreme muscle spasms, when I couldn't complete a 5K due to leg pain and weakness, when my hand began to shake without explanation and when going to work as a physical education teacher caused a level of fatigue and brain fog that I had never experienced. Each of these symptoms caused me to fear that I would no longer be able do the things I loved.

I was under the care of both a great chiropractor and physical therapist who urged me to find answers when there seemed to be none. It became a guessing game and a myriad of tests that never produced the answer. No one could tell me what was wrong, so how I was supposed to get back to normal?

After almost a year of testing in my local area and being told many different things without solutions, I reached out to a major research hospital which was seven and a half hours away from my home. Luckily, I was accepted as a patient and when I walked in the doors, I knew that I was in the correct place.

After a series of visits, I received a telephone call that would change my life and give me an answer to what had been ailing me for almost two years. The physician informed that she believed I had young-onset Parkinson's disease (YOPD).

While I never expected this diagnosis, I knew that Parkinson’s was manageable because I have a coworker who was also diagnosed with YOPD several years ago. Once I started medication, I began to get my life back. My movement disorders specialist told me about the Parkinson’s Foundation and the resources available for people living with PD. I was able to virtually attend a symposium to learn more about the disease.

I still can't run like I did before YOPD symptoms began, but I can box, teach my fitness classes and lift weights effectively. When I’m at home, I use Fitness Friday videos to stay moving. I learned that it is imperative to stand up for yourself and not give up on answers. If you ever find yourself on a diagnosis journey, don't give up! I believe that had I not continued to search for answers, my condition would have been much worse before I knew the cause of my symptoms. 

I now choose to spread awareness of YOPD through education, exercise and encouragement for those living with the same condition.

Explore resources for the Parkinson’s community.

My adventure with Parkinson’s disease (PD) started 19 years ago when my primary care physician noticed a slight tremor in my hand and sent me to a neurologist for tests. One year later, I was diagnosed with Parkinson’s. I have been pleased under his care, as he has been cautious  increasing dosages, and has not been too quick to introduce new PD medications. Now that my needs are increasing, I am thankful he didn't prescribe too much too soon.

A few years ago, I started a PD support group at my church. I reached out to the Parkinson's Foundation Helpline — at 1-800-4PD-INFO (1-800-473-4636) — for information and was grateful for their provision of both basic and more advanced information. The support group was successful, with a monthly attendance of about 15 people, including caregivers. As time passed, I became overwhelmed with preparation and leading the meetings, so the group disbanded.

Sharing some of my bumps in the road... have you ever hallucinated? One day I saw a cute mouse, dressed in a tuxedo. He ran from the kitchen to where I was sitting at my computer, he saw me and ran back. I set mouse traps. Days later, when he neither reappeared nor got caught, I realized he did not exist.  

I take three pills during the night (2 a.m. and 4 a.m.). This has been the answer to help me wake in the morning and take PD medications with breakfast, then waiting until noon before I have the energy or balance to do anything other than sit. It took about two weeks to fine-tune the timing. I hadn't told my neurologist what I was trying. I called the Parkinson's Foundation Helpline for their opinion of my unusual scheduling and was advised to discuss it with my doctor. He gave me a green light.

My physician and neurologist are both retiring. I am not happy. So, I called the Parkinson's Foundation Helpline for recommendations of PD specialists in my area. Although they provided some, they were too far for me to drive. I am exploring local neurologists, and trusting God to lead where He thinks best for me. I am in good spirits and try to give a listening ear and TLC to homebound friends. My hubby of 62 good years and I laughed a lot, and I continue (he passed six years ago) to.

I connected with the Parkinson's Foundation Helpline several years ago, and I view it as an always open door for help. I have appreciated them from day one. Without my hubby and my retiring doctors, I have almost found a "second home" with the Parkinson’s Foundation information specialists.

With every phone call to the Parkinson's Foundation Helpline, I ask for advice, information or opinion on minor and major issues connected to PD. I have always been connected to a patient, pleasant, interested, caring and knowledgeable Parkinson’s information specialist... who becomes more like a friend by the time I hang up.

Parkinson’s is not the end of my story. I believe that with God's guidance, family, friends and the Parkinson's Foundation, I may have a few more years to enjoy life.

Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

I was diagnosed with Parkinson's disease (PD) in 2013, after over a year of my symptoms being misdiagnosed. My husband and I were dumbfounded. Neither of us had anyone with Parkinson's in our families, and we knew nothing about the disease. While searching online for information about PD, I found the Parkinson's Foundation and decided to call the Helpline.

I talked to a Helpline specialist, who guided me through the Foundation’s resources and told me about a five-day workshop taking place not far from my home in Pennsylvania. My husband and I attended the workshop, and we were submerged in education, exercise, support groups and comradery. It was the best thing we could have done. I sat in on seminars led by doctors who stayed long after they were scheduled to speak, just to answer questions from attendees.

The workshop took place three months after my diagnosis. Up until this point, I had not cried. For days, tears poured out of me during these sessions — I felt this was expected, because there were boxes of tissues throughout the room. I left after five days feeling empowered by a better understanding my disease. I no longer felt alone.

My husband understood what I was going through. We came home from the workshop knowing others in our area living with Parkinson's. This was just the beginning of our journey in bringing Parkinson's awareness and resources to this corner of Pennsylvania. We started an annual 5k race that took place five years in a row, raising over $200,000 for Parkinson's research.

I became involved in clinical studies for Parkinson's research. One of these studies, which is being conducted in research centers around the world, is looking for biomarkers to diagnose and prevent PD. In 2020, I had deep brain stimulation (DBS) surgery. I continue to share my experience with DBS and serve as a resource for others considering the surgery. I also make a difference by volunteering with the Parkinson's Foundation.

My continued involvement with the PD community has helped me feel like my experience with Parkinson's happened for a reason. My journey has been made easier by my family. My husband has been by my side since we attended the workshop together. He understands my challenges. My husband, along with our three children and their spouses, were tremendously involved in the success of the 5k. The support I have been given by my family has made this journey easier.

Learn how to get involved as a Parkinson’s Foundation Ambassador.